Endometriosis UK
34,701 members30,951 posts

About to start Zoladex - any advice?

I’m due to have my first injection in a few weeks & im quite nervous about it. I’ve read about the side affects & quite nervous as it’s not like tablets where you can’t stop it if you can’t handle the effects as it’s alresdy in you. Also worried with the weight gain side effect as I’ve put on so much weight this year after not being able to do exercise due to pain & fatigue. Can anyone tell me their experiences & suggestions on how they cope?

Also how long have most ladies been taking it? I’ve been given 3 months to start with but unsure of what’s to come.

Many thanks for any advice. X

38 Replies
oldestnewest

Hey Im on zoladex I have been on it for over 6 months for the 1st few injections when being given it hurts so request emla cream it helps make it numb and not as sore. for the 1st 48 hours I feel sick after having it but it goes it will make you loose your appitite for 48 hours but after that I have been fine I has made me gaine a bit of weight but that has motivated me to go to the gym make you feel better doing light exersice and building up slowly. if you have some twinges like I do make hot water bottle and apply to sore area also I get hot flushes so I got myself a mini portable fan and some cooling head strips and wear light clothes indoors and bundle up when going out but put layers on that its easy to take off when needed. do not feel guilty if you need a bed day if you feel you need to. to rest and regaine energy if you exsplsine to friends family and your work they should understand as it is something you cant controlle. stay posivitve and message me of you need help advice and support.

1 like
Reply

Thanks rachyroo1243 for your advice. Where do they usually inject it?

Reply

tummy they will do it one side then the other side so its not injected in the same spot all the time

Reply

Ok thanks. Not looking forward to that either! Xx

Reply

Hi

I have been on zoldaic for 3 months and it has not helped me so going to have hysterectomy . The side affects are hot flushes,"you do gain weight and don't sleep very well at night time. Which has left me feeling exhausted during the day. I have had zoldaic before when I was 20 and it helped then but not this time. But everyone is different. Hope it helps you and good luck.

Justine

Reply

Hi Justine_123, thanks for the reply. I’m dreading the hot flushes & mood swings. I’m a single mum of 2 & I’m dreading incase I become snappy at them.

My gyne mentioned something about a hysterectomy but not sure if he was saying that was the next step or not. There was too much to take in.

Good luck with the hysterectomy x

Reply

Hi joseyjo, I can't really offer you any advice, but will join you on the journey as I am too about to start this treatment and also feeling nervous about the side effects! I will also be having add back hrt therapy to try and minimise the side effects which makes me feel a little bit better about it, is this something you are having too? I have read mixed reviews about this type of treatment, for some it has been brilliant, for others not so great. I have deep infiltrating endo on my bowel, awiting surgery, and my consultant explained that it can potentially shrink the endo lesion, hopefully lowering the risk of more extensive bowel surgery being needed so this was the selling point for me really, I thought it's got to be worth a try in that respect.

Good luck! Xx

Reply

Hi Pj74, no HRT was offered to me. The gyne just said to try 3 months at a time to see if it helps.

Good luck to you too. Be good to stay in contact through this. X

Reply

Yes definitely let me know how you get on! We'll call it 'The Zoladex Diaries' lol. My consultant has written to my GP just before xmas so I just need to get booked in with them to get the treatment started, but haven't been able to get in yet, and to be honest I wasn't in a hurry to start it over the festive season anyway! Let's hope it's Happy New Year! Xx

Reply

Hi, I received the letter a few days back as I told my gyne I didn’t want to start until after Xmas. I’ll contact on Tuesday to see when I can get in. It says I need an appointment with the doctor first but the nurse can administer it.

Happy new year to you too. X

1 like
Reply

Hi Joseyjo! Well I went to the GP today expecting to get the zoladex prescribed, then thought I would have to book in with the nurse to administer the injection but the doc offered to give me it there and then, which I wasn't expecting, he did say I could come back when feeling more prepared but I thought no time like the present! So I've had the first one, let's see what happens now!... Oh and it didn't hurt that much at all, just a very quick sting, much easier than I had anticipated xx

Reply

That’s good. I’ve got my doctors appointment but the first date available was the 26 January so I will be 3 weeks behind you!

Hope it starts to work for you & thanks for texting back. Xxx

Reply

Hi PJ74, how are you doing?

I have had my injection this morning. The doctor suggested I have a LA to numb my tummy beforehand. All went well didn’t feel a thing. Just a bit sore now. She said I can have HRT if I need it. She also showed me the letter she got from the gyne. He now thinks I may have endo even though I’ve been telling him this for a year now! Seeing him again in April. Let’s see what this injection brings. X

Reply

Hi joseyjo! Nice to hear from you! Glad it went well. I've got my second one next week. No hideous side effects so far, but I am also taking the hrt. My period was due approx 2 weeks after first injection which I fully expected to still get as I didn't think it would work that quick, but then it didn't arrive, despite feeling like it was going to (I'm normally pretty regular), so i was like oh good maybe thats it, no more periods 🤗 however has just decided to show up now a week late 😏, so feeling a bit grotty today, having painkillers, hot water bottle and duvet kind of day, but 'touch wood' no worse than usual. I was talking to a girl at work who had it and she says it worked for her - stopped her periods and pain and she doesn't remember getting any side effects, so thats reassuring, not everyone has a bad experience despite the horror stories! Hope it works well for you, fingers crossed, do keep in touch and let me know how you get on with it! Xx

Reply

Glad to hear it’s going ok for you. I’ve also had the mirena fitted in August so thankfully I only get spotting but the pains still there. Are you on a 3 month course or longer?

Yes there are some horror stories but also lots of good advice from ladies on here. It’s good to be able to chat with someone who’s going through exactly the same as petty much the same time. Thank you.

Will keep in touch. Take care. X

Reply

I'm having it until I have surgery which I don't yet have a date for, I was told last month the waiting list is around 3-4 months. I am also thinking about the mirena, going forward as i have pretty much decided i am DONE with periods! Although this is not something i have discussed with them yet...xx

Reply

First day not so good, I was back in incredible pain last night & it woke me up during the night. Still in pain now. I had up until now managed to subside that pain & deal with it but it’s worse. I hope this is what they call just a flare up & it settles soon. Xx

Reply

Oh no that's not great 🙁, hope it has eased now? Do you think the pain was definitely associated with the injection or could coincidentally be something else? They do say it can get worse before it gets better, but I wouldn't have expected it to take hold that quickly as it's very slow release 🤔 xx

Reply

Hi PJ74, hope you are well.

I’m still not good. 10 days after my first injection and I have had a terrible headache, sometimes migraine constantly. I’m in constant period pain, sometimes cramping so much it catches my breath, water retention isn’t any fun & im also getting tooth ache & joint pains. And my emotions are all over the place. Not coping too well. I’m taking 8 co-codomol a day but still in pain & headache. Going back to the doctor next week to get some more pain killers so will talk to her then. Xx

Reply

Oh no, I'm really sorry you are having such a bad time on it. I'm not doing too bad, sometimes tearful, and completely exhausted, but tbh I had hit a bit of a low point with everthing just as I started the treatment anyway so it's hard to know if what I am feeling is a direct consequence of the medication or not, so I'm coping, persevering anyway. I had my second injection last week although this time they have gave me prostap, the nurse said this is normally tolerated a bit better and its a bit 'nicer' to have as its just a normal injection as opposed to the zoladex implant (I also think there is a cost implication, I think prostap is slightly cheaper). I hope your GP is sympathetic and you can get some relief, let me know how you get on... take care for now xx

Reply

Hi, how have you been getting on? Is the prostap any better with side effects? Xx

Reply

Hi joseyjo, funnily enough I was just wondering how you were getting on today! I'm much the same, mainly struggling with fatigue and feeling down, sometimes headaches and nausea but manageable, no hot flushes so I think the hrt is helping in that respect. 3rd one due next week. Am hoping it might be the last, but I still don't have a date for surgery so there might be a 4th! I would prob feel a whole lot better if I knew for certain then I least I could see a light at the end of the tunnel and know how long I have to persevere for! So how are you getting on? Xx

Reply

Hi PJ74, sorry I haven’t been in touch. How are you going? Have you had a date for surgery yet?

I had my 3rd injection last week. Still not enjoying the pain & side effects. The doctor told me to try & ease off the co-codamol as she thinks that’s making my headaches worse. My memory is shot though which she said is a big side effect of menopause. My emotions are rubbish though, feel quite tearful a lot but thankfully I’m not snappy. Got my gyne app on the 9th April so will wait to see what he says.

I can’t remember what he said about the zoladex. If it took the pain away it was.??.. or if the pain was worse it was.....??

Do you feel that because no one can see your illness that they think you are ok even though you are in pain everyday & knackered.

Hope you have some goood news soon.

Take care x

Reply

Hey joseyjo, I'm not feeling too great at all tbh, not sure how much longer I can tolerate this, still no date for surgery, 4th injection this week... again hoping this might be the last. To be fair it has relieved the worst of my endo symptoms but I'm not sure the benefits are outweighing the side effects for me right now. And yes I do know what you mean - I just returned to work after being of sick for a while and someone said "you look really well", she meant it with good intentions, but I just kind of politely smiled and nodded, all the while thinking if only you knew the internal physical amd emotional turmoil. Good luck with your appt in April xx

Reply

Sorry to hear still no date & not feeling great. I’ve got my appointment tomorrow & really nervous about next step.

Really fed up of the side effects now.

Take care.

Reply

Hey Joseyjo, I'm fed up too, this must have been the longest 4 months of my life waiting on a date for surgery... and still waiting... feels like it's never gonna happen, and my life is on hold 😔.

Let me know how you get on at your appointment xx

Reply

Hi, saw the gyne & he agrees it doesn’t look like it worked so wants to see me in 3 months after it’s all out my system. Looking at pain management rather than the cause. He’s not going to do hysterectomy as can’t see benefit. Feel like I’m just being passed off. I asked for MRI but he said it won’t show anything which I don’t agree with then tried to get appointment with my GP to see if she will do MRI but they are all book on the day for the next 2 weeks.

Really fed up.

Hope your date comes soon.

Jo x

Reply

Is this a general gynae or endo specialist? I would be asking my GP for a referral to a BSGE centre if I was you, if you are not under one already that is... xx

Reply

It’s a general gyne but I’m told he’s good. How do I get my GP to refer me? She’s said she doesn’t understand endo at all & is using me to learn more. Do I make a fuss & say I want a second opinion?

I do keep thinking about my lap which only took 15 mins. This also included a hysteroscopy & mirena fitting too which isn’t long to have a good look for endo.

Reply

You can Google NICE guidelines for treatment of endo - there is a simple algorithm of initial treatment and when to consider referall to specialist centre, e.g. severe endo or when other treatments have failed... you should be able to work out if you meet the criteria, and your GP sounds quite proactive in saying she wants to learn so may well be worth having a chat with her, and take a copy of the guideline with you. You can also look on BSGE website to find your nearest specialist centre, depending where you live you may have to travel (mine is about an hour drive away). I'm no gynae surgeon but I agree, 15 mins does not seem long at all to have a really good look around! Unfortunately you do hear of general gynaes missing disease at first look... Let me know how you get on xx

Reply

Brilliant many thanks, you have been really helpful. I will have a look at the guidelines. There is a BSGE centre at my towns hospital but what the madness part is this general gyne from another trust travels 20 miles to hold a clinic at my doctors which is situated on the same site as the hospital. Crazy. I’ll let you know how it goes, thanks again. Xx

Reply

How are you getting on joseyjo?... xx

Reply

Hi Pj74, sorry I haven’t been in touch, work has been unbelievably busy but thankfully we are going into a few months of quiet time now.

How are you doing? Have you had your op date yet?

I went back to my gyne yesterday & he thinking having a hysterectomy will help. It may not get rid of all the pain but will certainly help. I need to decide if I want it or not. It will be a full one with ovaries too. He said it would be October / November before it happens now.

Take care

Jo xx

Reply

I've just had my 1st injection (3 weeks) of decapeptyl which I think is the same thing. Things haven't been as bad as I thought. I've had the odd 'warm' moment but not necessarily a hot flush. Strange thing with my vision in that I'll look at a page & I'll see straight through it, not able to concentrate on the words, sore throat, very bad back pain (Endo on bowel), very very tired though & it takes me a couple of hours to get to sleep at night but then I cannot get moving in the morning. Since we've been off over Christmas I've had to have a sleep every day, very achy joints and typical Endo pain, but the Endo pain hasn't been as bad. According to my husband, my body smells acrid though which is a bit worrying!

On the plus side my weight hasn't gone up & if I hadn't eaten so much rubbish over Christmas I am sure I would have lost weight. My nails are growing rapidly and in great condition and my hair is growing well, its thick & shiny too!

I'm due to start HRT next month but not sure I want to. Assuming I have to at 35?

Good luck and stay brave. Like us all with this horrible disease, you are very strong! X

1 like
Reply

I didn’t have side effects. Give it a try and see how you get on, it did wonders for me.

3 likes
Reply

I’m on my second one and my periods stopped now. First injection I had bad symptoms and the worst period ever but now things are settling down..

It’s a means to an end!

1 like
Reply

Hi,

I have my first zoladex injection this Friday. What was getting the injection like? Did it hurt? This is what I’m most worried about

xx

Reply

Hi Sarah, it’s was fine. They used a local anesthetic before the zoladex injection. Nothing more than a quick sharp scratch from the abesthetic needle & couldn’t feel a thing with the zoladex injection.

Good luck

Reply

You may also like...